Introducing myself...

Anonymous

Introducing myself...

IronMom3

Hi, I'm new here. I was diagnosed on Friday with a T2N0 malignant mass, 2cm x 3cm, which from my research looks like stage IIA. We met with the surgeon but are still waiting to meet with the oncologist. We don't have ER, PR and HER2 results yet. My biopsy showed DCIS in parts and invasive disease in other parts, so I am not sure what the final diagnosis is. I assume the oncologist will tell me.

I am opting for chemo first, followed by a double mastectomy. The surgeon said it would probably be about 6 months of chemo first, and my reconstruction will happen at the same time as my mastectomy surgery, which is really nice.

I am 41 (had my mammogram, ultrasound and biopsy on my 41st birthday last week) and have 3 kids. My youngest son (11 years) is a cancer survivor, so this all seems like one giant nightmare. I am active and compete in long distance triathlons. I'm hoping I can continue to stay active through my treatment. Is there anyone else who has been able to stay relatively active during treatment? I would love to hear your stories.

123JustMe

Hi IronMom3,

Welcome to BCO. Sorry you found yourself.

I am not an Ironman fan but since diagnosis I have lost 47 pounds through exercise and dieting. I know there are other active women who have a similar

diagnosis as you and they will pipe in soon. For now I will bump this so it doesn't get lost in the discussion boards.

Welcome again!

keepthefaith611

Dear IronMom, I am waiting for results today at 3 but wanted to send you my best wishes and prayers.

KTF

Moderators

Ironmom3-

We want to welcome you to the community here at BCO. We're sorry you find yourself here, but we're glad you've joined us, and hope you find the support you need here as you wait begin down this road.

The Mods

JXmom2

Hi ironmom3

I just got my biopsy results back

IDC, grade 3 (est/pro her all neg) ki-67 90%

My dr called Me in he already has an appt set for me in 3 days with a surgean.

What is next? What happends first at this new appt?

Do i have to get it cut out and all checked first. If i walk in and say i want the double mastectomy and go from there, can they just check the stage/lymp nodes while they do that. Then treat me with whatever else needed.

Im 27 i have a 2 year old little boy and i am with you i wanna stay active, i wanna look healthy and okay, i wanna keep good memorys for him no matter what il have to face.

ChiSandy

Hi, ironmom3. Any reason other than your young age why your MO is jumping the gun and choosing neoadjuvant chemo with no positive nodes and no info yet as to the tumor’s histology? I know Canada doesn’t always cover Oncotype DX testing, but why not wait till after the full biopsy report is in? Grade might also give you a clue as to aggressiveness vs. indolence of the tumor. One woman in my support group, who is Stage IIA, is part of an ongoing North American study administering neoadjuvant endocrine therapy—but not chemo—to ER+/PR+/HER2- Stage IIA patients. Maybe you’re a candidate? (I wasn’t, because my tumor was Stage IA). As to the BMX, that’s your call. Everyone has her own priorities, all of them valid, when it comes to type of surgery.

Alice (Moondust) in CA is an avid hiker and climber and remained so throughout her chemo (I seem to remember reading something about a trip to Yosemite….). She also hasn’t gained weight, which is truly an achievement for those actively in chemo (steroids) or taking endocrine therapy (reduced metabolism).

exercise_guru

Wow you are so calm in your post. I know this is overwhelming and there is so much ahead of you. It sounds like you already are one strong mama. I think that your plan sounds solid. A few things. I think it is well worth it to get a second or a third opinion so you know you have options and that you are pursuing the best path. For reconstruction don't put off choosing a plastic surgeon and breast specialist. It is far better to interview and get information now at the beginning of the journey. You will be the strongest now and well later its hard to make some of these decisions when you are so ready to be done.

I will say my strongest recommendation is try to avoid

implant under the pec muscle reconstruction or

losing your tricep or

abdomen muscle for a breast

I am not sure how attached you are to reconstruction but I used to do triathlons ( just comunity stuff but still) and I wonder if I will ever be able to bench press more than 15 lbs again. I truly should have gone flat rather than give up my pec muscle.

Pick the best breast surgeon and VERY best Plastic surgeon you can make sure they are clear and on the same page as you.

Also if you can be put in touch with a reach for recovery mentor that is a godsend. Lean on your telemedicine nurse if you have one in your area.

feel free to pm me if you need more information or support. My kids are 9 and 11 and I have a similar story.

Meow13

I am able to swim no problems, but I do have some discomfort in the abdominal area where my incision is from DIEP. Hormone therapy was a killer for me, I feel much better after stopping.

IronMom3

Thank you for the welcome and the good wishes.

JXmom2, good luck at your appointment. It's so much to take in.

ChiSandy, we have a close friend whose wife took a more passive approach with a not good outcome. So we were given my options, and I feel better seeing a response to chemo before removal, and that's why I've chosen that route. Full biopsy results will be in by the time I see the oncologist, so nothing is set in stone yet, but from the options I was given by the surgeon, that is my reasoning for this option. I don't think we have Oncotype DX here, I have never heard of it but I will ask.

Exercise Guru, I guess I'm feeling somewhat calm because I'm not so far removed from going through my son's treatment. I appreciate the advice about reconstruction, you've mentioned some things I would not have thought of. Things are different in Canada, we can ask for a second opinion but it's not really shopping around/interviewing like it is in the U.S. I will be sure to ask lots of questions and make sure my plastic surgeon is on the same page as me.

It's nice to hear that some were able to keep active. I was supposed to be riding my bike across Canada next September to raise money for childhood cancer research. While I'm guessing that won't happen now, I still want to stay fit.

IronMom3

ChiSandy

Waiting for a full path report—which would contain hormone-receptor & HER2 status, grade, mitotic rate (all of which we knew from my core biopsy sample)—is not a “passive approach” by any means. (Just out of curiosity—how do they know your tumor is node-negative without having biopsied the sentinel nodes? Did you have a core biopsy, or did you already have a lumpectomy and SNLB, and the BMX after chemo would be basically prophylactic)?

Ask to see the entire report—you want to know the degree of hormone-receptor positivity (both ER and PR), HER2 status, grade (whether based on degree of differentation alone or on Nottingham score), and mitotic rate if possible. You need all this information to determine if chemo will even work.

Just know that with a highly ER+/PR+/HER2- node negative Grade 1 or 2 tumor (especially with a mitotic rate of 1), you might not get enough of a response to chemo to make its side effects worthwhile. It just doesn't work that well on slow-growing cells. I continue to be shocked by the Canadian health system's failure to consider a test that has been standard-of-care down here for years now, and which could save not just untold misery for patient but a huge chunk of change for the gov't for the cost of chemo drugs. (Unless they've already paid for all the chemo drugs on hand and Ottawa insists on getting its money's worth….). Maybe they’ll pay for MammaPrint.

Mariangel43

Exerciseguru, I want to ask you, why not the implant under the pec muscle? That's where my PS is going to do it to avoid implant movement. I was performed a complete mastectomy and I have a skin fold to do the recon. I need to know. I have had three surgeries, held the final recon until finishing RT to avoid a fifth one (changing a damaged implant). My TE is under the pec muscle now; after the initial days (which were like hell) pain subdued and only feel the pressure of the TE on my chest. Since my implant will be no more than a size B, should I be alert or not go with the planned surgery?

Mariangel43

Ironmom, I agree with ChiSandy. When I was biopsied, I was notified after the histopathology report was received (interestingly three weeks after (I cannot hate the guy). But by seeing a tumor no one can diagnose a type of lump or tumor. Just wait until you receive the report. You have a right to get it unless you have special conditions that impedes this.

No, in the US and territories, plans don't give us the chance to go window shopping for doctors. But you can move until you get satisfied with the health care that the physician is providing you. I changed the BS, I had a second opinion with an MO (highly recommended by new BS but not by me and I am finding a second opinion about RT with a new RO because I don't like the one I was sent and the tx she planned.

See you at night, dear ladies.

IronMom3

Yes, as I said, we will have full results before anything is started. I appreciate the suggestions and will add some questions to my list, based on these responses.

The negative nodes is not based on testing. If I opt for either a lumpectomy or mastectomy first, a sentinel node biopsy will be done to check. At this point, there is nothing palpable or visible on scans.

The type of lump was not diagnosed just from seeing it, it was diagnosed from 4 core biopsy samples that were taken.

Oncearunneralwaysarunner

Hi IronMom3,

I wanted to chime in as another Canadian, what you describes sounds pretty close to how my diagnosis unfolded. I was diganosed by core biopsy, once I met with the surgeon he ordered the testing for hormone and HER2 receptors and referred me to the medical oncologist and radiation oncologist. Neo-adjuvent chemo was suggested by the surgeon to give me better results for a lumpectomy due to the size and location of my tumours (I had three tumours in my breast and one positive lymph node which was biopsieed at the same me time as the lumps). Given my HER2 status and other tumour characteristics chemo was a given and my MO wanted me to start right away and no additional testing was ordered. I have met other ladies who had other testing to see if chemo would be beneficial so Ontario doctors won't prescribe chemo if there is no benefit.

As for exercise, I ran my best marathon three days before finding my lump. I was able to run during chemo but I had to reset my expectations due to the fatigue and a cold that lasted two months which made it hard to breath. My biggest tip would be to listen to your body and be kind to yourself

Anonymous

Ironmom, in answer to your original post's question--how to stay active--sometimes you have to really focus on simply pushing through some of the fatigue of chemo, but I stayed active all through my 6 months of treatment. I continued to go to bikram yoga, which is challenging, at least 2x a week. I went to the gym to lift weights 2x a week. I walked appx 2 miles a day with my dog, and although I wasn't running during that time for reasons other than chemo, I would hike after every Taxol chemo treatment--45" or so at least. There were times when I had to really force myself to get out there--but I did it. I already had that routine before dx, and refused to let anything change that routine, since it brought me comfort and made me feel normal in spite of the isolation of the dx and subsequent txs.

Staying active seems to have a lot of benefits and relieves chemo side effects--actually helps relieve nausea and fatigue.

http://www.breastcancer.org/research-news/exercise...

As for your bmx/immediate recon, since I wanted to stay small-- (sporty, my surgeon quipped, which made me laugh),--I'm originally a 36A+B-,but now I think I'm about a 34 B because I lost some weight-- I had my bmx and immediate recon together. The implant went under the pec muscle, and now when I run my breasts don't really move around that much which is actually nice. The surgery was also mostly a non-event. I wasn't sore, and healed within 3 weeks--I was back in the yoga studio in about 2.5. Never did affect my ability to hike. There's a nurse's study (research) that found a direct correlation between reduced recurrence and moderate activity in women who had been dx with b.c. 3-5 hours a week of moderate exercise seems to be the goal; anything more will have other benefits, perhaps, but doesn't seem to reduce recurrence more.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3507507/

Hope that helps!!! It's shocking to find yourself here, but it's a great supportive place and should bring you information and comfort, too. You'll find others continued to run, cycle, etc during chemo, if you search these discussion boards.

Claire in AZ

IronMom3

Oncearunner, thank you for chiming in, it's nice to hear that your diagnosis started out like mine. Things seem to be much different up here.

ClaireinAZ, I also have a daily routine and am used to about 10 hours of exercise per week in my off season (winter), so while I'm prepared to cut that down significantly, I also hope to keep my schedule and just lighten it a little. It's nice to hear you were able to.

IronMom3

windingshores

Please pay attention to what ChiSandy has written. You can wait for pathology results to get a better idea....

Furthermore, in some cases, traditional pathology results no longer guide treatment here in the US: the Oncotype Dx test does. I had grade 3, highish ki67, an lymphovascular invasion but my Oncotype was very low, meaning no chemo. I had high ER/PR sensitivity though. It isn't just about being aggressive and throwing everything but the kitchen sink at it, it is about what will work. MY Oncotype report showed I would do WORSE with chemo in terms of mortality.

(HER2 + always needs chemo...have you had that test?)

JXmom2, so sorry for what you are dealing with. Maybe a separate thread will bring you support (and maybe you already have one).

exercise_guru

Mariana I'm sorry I posted in a rush the other day. There is so much to consider. Every reconstruction option has pros and cons and unfortunately it's difficult to anticipate the side effects and limitations reconstruction can cause.

My plastic surgeon gave me strong reassurances I would be fine exercising at a high level after reconstruction with the implant under the pec muscle. That has not been the case for me. Having the implant under my pec muscle significantly decreased my upper body strength and endurance in swimming,shoveling carring items etc.

With treatment it's hard not to just go with the flow of what is recommended and live with the consequences later. We all have difficult choices and we each do what we can to choose out of a menu of undesirable options to get the best outcome we can.

If someone has physically demanding employment or a very active lifestyle like Iron Man triathlons it's important to try to find the best customized reconstruction or understand that no reconstruction is an option as well. It's important that they are able to live their life productively doing what they enjoy and love. In many cases our surgeons make these decisions and then we are left to change our lives to this new reality.

downdog

Ironmom3, granted it's your decision as to your treatment, but your friend's wife's tumour profile, personal health and medical team are not yours, and it may not be prudent to draw parallels. I would be cautious about letting the circumstances, timing and decisions regarding the unfolding of one person's experience that resulted in a poor outcome be the primary driver rather than assessing the facts in my own particular case. Neoadjuvant chemo is often given to shrink a very large tumour in order to have a less deforming cosmetic outcome with a lumpectomy. Not sure why you would elect to have chemo prior to a BMX to shrink the tumour, when you will be removing both breasts anyway. Cancer Care Ontario does cover the Oncotype DX test for ER/PR+, HER2-, node negative (N0)/node micrometastases/isolated tumour cells. So patients with 1-3 positive nodes must pay out of pocket, because at this time, CCO has not determined that there is a sufficient evidentiary base on which to recommend coverage. Since this is an out of country test, your oncologist must complete the paperwork for pre-approval by the Ministry of Health, in order for OHIP to cover the cost in full. Oncotype DX will only be done on the surgically excised tumour specimen, not the biopsy sample, since nodal status is only clinical prior to the final pathology from surgery and the SNB. Ontario was the first province in Canada to pay for the Oncotype DX and has done so since 2010. I know British Columbia covers the test under the same eligibility criteria. I doubt the territories cover it and smaller provinces may not, but I am not certain. I am in Toronto and my oncologist offered me the Oncotype DX within minutes of meeting her. Are you at a community/regional hospital or at a major cancer centre with breast cancer specialists? Personally, I would never elect to have chemo, unless there was compelling evidence that the benefits would outweigh the risks, permanent side effects and collateral damage.

BRA-Day (breast reconstruction awareness) is on Oct 19 at many cities in Ontario. Check bra-day.com for exact dates and locations. The Toronto flagship event will have close to a dozen PSs, whom you can meet and ask questions. It's a great way to figure out which PSs are a good fit for you and then you can request a referral to one or two. There is also a show and tell lounge where there will be close to 30 bare-chested women who have had various types of reconstruction. You can see firsthand what results they have had and talk to them about their experience. Smaller cities will have fewer PSs in attendance.

Many women who have had positive experiences and moved on with the lives aren't still on bco, so the postings here are skewed more toward problems, pain, mental and physical nasty sad effects and other difficulties, challenges, and complications. There are lots of warnings about recon requiring multiple surgeries and needing the wherewithal to be up to it. Not all recon needs multiple surgeries. Rads will need fat grafting. PSs will often use fat grafting to fill ripples and divots. Some of these could potentially be avoidable with greater surgical skills and abilities. Everyone is affected differently. Your recovery from surgery is generally correlated to your health and fitness. The fact that you compete in triathalons will likely mean you'll bounce back quickly from a BMX and recon. If you don't have a really low body fat % and are considering implants, pre-pectoral (above muscle) is offered by a handful of PSs. Choose your surgeons carefully. Don't underestimate the importance of an excellent BS. Some women have complications and nipple necrosis post-BMX, causing nipple loss in some instances. A skilled BS is necessary to provide healthy vascularized flaps of consistent thickness, and the lower your body fat, the thinner your skin flaps will be (and the more challenging the mastectomy). I had a single surgery with a superb outcome, despite 10% body fat. My implants are under pec, and while I don't want to trivialize or invalidate anyone else's experience, I breezed through recovery. My surgeons told me that I was the fittest recon patient that they had ever had and would learn from me what was possible. I did walking lunges around laps of the hospital on my hospital overnight, lower body yoga poses and ab exercises. I couldn't get out of there fast enough the next morning. Since you use your pecs when your arms are on the handlebars, I didn't cycle until week 4. All my restrictions came off then and I started working back to my pre-surgical abilities. I swim all strokes and butterfly took the longest to regain my performance levels. It took a lot of time and effort, but I was back lifting really heavy weights in the gym by about 6 months. I train chest once a week and have no issues. I can crank off pushups easily. My pecs mask the step-off transition at the top of my implants. I didn't have chemo or rads, but bco member KBeee remained very active throughout both of these.